What to do when the guilt of taking a rest washes over you

Living with lupus or another chronic illness means making decisions most people never have to consider. One of the hardest choices for me was to prioritize rest, even when it meant saying no to family, friends, or opportunities.

For those of us with lupus or similar diseases, saying no can come with heavy guilt. We worry about disappointing others or being seen as unreliable. I was so worried about letting others down that when I was newly diagnosed, I’d say yes to everything. I didn’t want anyone to see me as sick or different, and I quickly learned that pushing my body to the brink often meant long flare-ups and hospital stays.

As I’ve matured (I’m 46 now) and better know my body, I’ve become more in tune with its signals. I can easily recognize when my energy is running low, when symptoms are starting to creep in, or when a flare might be on the horizon. And it’s in those moments that I now force myself to stop and rest. Yes, it’s easier said than done!

I remind myself that rest isn’t laziness; it’s a crucial part of managing my health. Choosing to rest today can often help me prevent worsening symptoms and longer flare-ups tomorrow.

Recommended Reading

January 27, 2017 by Kristiana Page

Feeling Guilty Because of Lupus

But despite knowing this, resting can still feel complicated. There’s often pressure, whether it’s the pressure we put on ourselves or the pressure from others, to push through fatigue and show up, even when we know without a doubt that our body is telling us to do otherwise. Often, and especially around holidays or special events, the guilt we feel for letting someone else down instead of staying home in bed can lead us to say yes when we should be saying no, pushing through exhaustion to keep up appearances.

In these moments, we need to remind ourselves that the consequences of that yes are real. Overdoing it can be a symptom trigger, increasing pain or requiring days or even weeks of recovery. Saying yes might feel good in the moment, but the aftermath is often far worse. This cycle of overexertion, crash, and guilt becomes exhausting, not just physically but emotionally, too.

Guard your rest

At this point you might be thinking, how do I say no to something or someone if even just the thought of it makes me uncomfortable? Here are a few tips to help, but from my own experience, it isn’t easy at first. Many years later, however, the word “no” actually rolls off my tongue pretty quickly as I’ve gotten used to spending my limited amount of time feeling OK on only the things that are high on my priority list.

Here are a few ways I’ve found to say no that are both gentle and firm:

• Be honest and clear. You don’t need to go into detail, but it’s OK to let people know you need to rest. Try saying, “I’d love to join you, but I need to take it easy today to avoid feeling worse,” or “I’m so sorry to miss it, but I’m getting through a flare and am resting to pull out of it.” Then let that be the end of the story. No long, detailed explanations are needed.
• Offer alternatives. If you want to stay connected, suggest other ways to spend time together, such as, “I can’t make it today, but let’s have a phone chat or FaceTime this weekend.”
• Remind yourself that it’s not personal. Saying no isn’t a rejection of the person inviting you. It’s simply you honoring your body’s needs. And the people who love you will understand that.

I promise that with time, saying no and setting boundaries for your health does become easier, and so does releasing the guilt that can come with it.

Remember, resting takes courage. It takes strength to listen to what your body is telling you and then act on that, even when every other voice is telling you to do something more. When we allow ourselves to rest without the guilt, we’re giving our body exactly what it needs to heal and function better. Think of it as an act of self-love and an acknowledgment that you deserve rest, care, and compassion just as much as anyone else!

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.